Autism, masking and ageing. A personal view.

July 1, 2018 § 31 Comments

 

Sonia Sketchng for Spirit of Beehive

Recently at work in my studio – exploring images of childhood in film.

This post  is about both ageing and masking. Masking can be a difficult subject as some autistics can’t mask their autism, and those of us who can often wish we didn’t have to, and yet we may depend on masking to get by. Masking overall is not really a choice though in some circumstances we can chose to unmask ourselves. We may also just be unmasked by circumstances – and this can be deeply confusing and humiliating. It is both a relative privilege and a survival strategy. Yet however important masking can be in mediating aspects of autistic challenge in neuro-normative spaces it is also pernicious in it’s effects on us.

Revealing autism and unmasking are not entirely the same thing in my view – and this is worth pointing out. One of the difficulties we face is that to talk about being autistic we must often use our masks and perform as neurotypicals. To ‘act autistic’ is another level of communication about who we are. Unmasking is a complex negotiation of self in relation to others which may need to take place over time and may never be a complete or finite entity.

Understanding and finding a balance in masking autism is a real challenge for me. I’d like to share aspects of my recent experiences. Please do feel free to comment – I’d love to know how other autistics manage this.

—————————————————————————————————————————————–

There’s been a huge amount for me to process lately. SO vast is the task of navigating the world as a relatively new autistic that at times I simply buffer. Some days I’m not exactly engaging with life – I’m beach-balling like my overstuffed laptop.

Someday soon I need to empty content. It’s reached that dangerous tipping point where the cursor acts up and jiggles uncontrollably. This is a sure sign of near laptop meltdown – I should delete or transfer as much as possible to an external hard drive.

And so it is with life. I’m clearing out cupboards – in the hope of making space to think more clearly and get through my days with more ease. In the area of clothing this feels vital. Less will be more surely? Garments that have lain around for years – high on promise and low on actual wearability – must go. I look at them with new eyes. They belong pre-diagnosis when I didn’t know myself. What versions of me hang therein? None I now recognise.

I put them in a bin bag ready for donation – crossing all my fingers. May they go to a good home! May their departure lighten my load! I want to stop all this damn buffering.

Just lately I’ve been coming up against my limitations in more tangible ways. The gaps in functioning provoked by some of my recent escapades have pushed me to my limits. This has been painful – more challenge in my life means facing my invisible disabilities head on. Adjustment is constant – there is no official support for my situation.

Also – I grow old.

I’m on a species of cusp so to speak. I’m in the run up to a brave new decade, and contemporary culture demands women declare each decade the new previous decade. We’re not allowed to age visibly without dismissal.

So as women we must join the race to be younger, more energetic, and ever more positive versions of ourselves than before if we don’t want to be deleted. If you’re a late diagnosed (masked) autistic woman it’s a double whammy as we’ve been invisible all along!

I simply feel old. This is desperately unfashionable, I do know this. I should be scaling mountains and learning to yodel! This is so never going to happen, in case of doubt.

As a woman of 25 I felt ancient too (at times). Being autistic makes for vast differences in perception and sensory experience – which is often plain exhausting at any age. I must remind myself that I may not always feel quite so compromised – I will eventually find some bounce back, I usually do.

But it’s the cross over in ageing with late diagnosed autism I’m running up against. My body is slower, and the gaps in functioning feel more solid somehow. I hit the wall ever sooner. My spoons simply do just run out.

How this relates to my newfound reluctance to ‘mask’ I don’t know, but the pain and humiliation around masking is greater since my diagnosis two years ago  – I don’t want to mask anymore. Yet unmasking is not always practical or useful (let’s be honest here it’s not called privilege for nothing). I have so much left to do both creatively speaking and as a mother – all of which mean I must be out in the world.

I need a better strategy, but what?

In recent days I’ve rehearsed unmasking scenarios in my head for those brick wall moments. Unmasking on public transport for example (I now realise) requires a conversation. This is often beyond me in extremis and so I tend to push through.

At times can I barely keep my mask in place and deep sense of alienation haunts me  during and after highly stressful situations. Revealing my autism might at least bring kindness and relief, I sometimes hope. Yet the risk that I’ll be met by miscomprehension and even cruelty (however casual) is great.  Condescension, dismissal and denial are also common reactions. This is what makes masking a privilege.

It’s a negative feedback loop which can erode a person’s sense of self and self-worth, really it can.

This deep instinct to mask is brought about by fear. It’s an adaptation for social survival. So how exactly do we drop it?

Age should bring us wisdom passed down the generations.

But we’re both the lost and the pioneer generation – we have to work this out for ourselves. That’s tough – there’s no way round this.

I long to be kickass about masking, but this doesn’t really suit my personality. This would simply be another mask. As I write this I feel relief. One more pressure I can drop like a hot coal.

I want to end this post by focusing on the good stuff. We are making change happen as a community little by little.

Earlier this week I was met with the most extraordinary kindness in unmasking my autism to a new colleague – genuine dialogue can happen. Last week I also appeared on an exciting panel at Kent University, Autistic Women, Feminism and the Arts, with the most brilliant autistic women both masking and unmasked.

On an individual level for those who have masked to survive, masking, as I say in my introduction, is a daily negotiation. We shouldn’t underestimate the struggle this represents and the level of ignorance we face which often blocks us.

Campaigns to unmask ourselves are a wonderful thing, if this works for you. The potential for such dialogue to further our cause in the mainstream engenders hope in me. Such campaigns, at the very least, can rally us and strengthen us at both individual and community level. With luck it can open other minds to the challenges of being autistic via authentic voices.

But I want to say to those who may feel pressure and confusion after so very many years of masking – masking can be okay as a strategy. After a lifetime, you might not even know where masking begins and ends in your psyche. I myself am not sure about this. Habits and adaptations are etched into us over time.

Until we come up with something better masking is sometimes all we have.

Because I’m older I have to practice patience about wider change. It may not come in my lifetime but nothing will convince me that the neuro-revolution is not on its way.

 

 

 

 

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§ 31 Responses to Autism, masking and ageing. A personal view.

  • Beautifully expressed, thank you Sonia. Resonates so deeply.

    Liked by 2 people

  • I can completely relate to your old feeling! At 26 I feel so old! And masking does seem to be more tiring, after knowing that it exists, and that I am doing it and that it is something other people do not do on a daily basis (at least not to the extent that we do!).

    I can relate to so much of this, and really deeply feel how hard it is to explain this to others and the decisions we have to make everyday. It feels like solving a riddle sometimes. I’m very glad you had a nice interaction with your colleague.

    I once had someone ask me why I wore headphones and why it made me hear better (after a meeting). I stood there paralyzed for about 30 seconds trying to think of whether to disclose, or to just say I had hyperacusis (the person didn’t know me well at all). My very understanding mentor probably saw me freeze and replied for me that I have hyperacusis and that she noticed before (hence why I had been wearing headphones), and didn’t make it a big deal or anything. I really appreciated that.

    Liked by 3 people

    • soniaboue says:

      Great to have this wonderful supportive mentor! Thank you for reading and for leaving a comment.

      Liked by 1 person

    • Leonie Cent says:

      What is it with feeling old at 26 ? I’m 53 and been masking my whole life up until now. I know I sound mean saying this, but I’m not trying to hurt you, cos I too, felt old at 26. Please remember, you have so many years in front of you to become who you truly want to be. By the time you’re my age, imagine how great you’ll be, with all the knowledge you have now, and will accumulate. The glass is half full 😀 all the best x

      Liked by 3 people

      • soniaboue says:

        Thank you Leonie – you’re really kind. I am your age and more, but in my article I was looking back to when I was 25/6 and reflecting that I felt old then too. I think your philosophy of glass half full is lovely 🙂 All best to you too! x

        Liked by 1 person

      • Ha, I don’t take offense! I do feel somewhat lucky to have been diagnosed even this early, as I know that is unfortunately not the case for many women! I feel like it will likely change the trajectory of my life significantly, but probably in a good way.

        Liked by 1 person

  • AutieFortyAndFAB says:

    Well said. I’m someone who’s never really masked (diagnosed at 44) mainly because I’m a terrible actor. As a result, I’ve had fewer mental health issues than most autistic people I know, but the price I’ve paid is that I’ve made very few friends or connections throughout my life. Though I think I have somehow managed to mask at work as I’ve been in the same job (self-employed) for over 20 years! So it’s swings and roundabouts

    Liked by 3 people

  • Jack says:

    I was diagnosed 5 years ago when I was 18. It took me a while after that to realize that I had been masking as an adaptation since preschool and that that was a big reason for my lifetime of anxiety. Sometimes I felt (and still feel, though not as often) like I had to hide certain behaviors or desires (mostly stim related) even at home. Now, rather than catching myself doing “unusual” things and masking them, I catch myself suppressing my stims and social inclinations and have to consciously unmask them.
    I still struggle with anxiety about this at work sometimes, but I only intentionally mask when working with students (I’m a tutor) because revealing my autistic traits is socially unnecessary and would be distracting for students who just want help with homework. However, with coworkers and general socialization at work, I do not hide myself; I am stimming near-constantly at work, and I don’t worry about neurotypical social necessities other than politeness.

    Liked by 4 people

    • soniaboue says:

      Cool! This is really good to know. Sorry you’ve had such anxiety to deal with – that is a real drain on energy. SO good that you can be your autistic self at work in the main. I think you call re students is very wise. TYSM for sharing this it will help others reading this blog too.

      Liked by 1 person

  • Catherine says:

    I see 25 – 26 as very young! I am 60, so….. I didn’t know I was autistic until 4 years ago but have always known “something is wrong with my brain”. Masking all through work and personal life. Only work 5-6 hours per week now for the past 3 1/2 years. It has been only through this new freedom and time that I have been able to see the mask and experience myself as “raw” and unmasked. Love your decluttering and simplifying efforts – this too has been so valuable for me. Thanks!

    Liked by 3 people

  • Rhi says:

    You express many of my worries so well. I have noticeably less energy than ten years ago, and I know this is going to continue. I have relied on my excellent memory to fill the gaps in my executive function, and that is waning too. Energy and memory were my main coping strategies, now I have to build new ones. I still fall back on my mask at the first sign of trouble. It is useful. It is a tool, but it gets heavier every day.

    Thank you

    Liked by 3 people

    • soniaboue says:

      I have the idea that we may be able to pool ideas and resources to hack some of this. I recognise exactly what you’re saying – its when the compensatory skills we’ve relied on begin to get worn down by time that we can really begin to feel it. xx

      Liked by 2 people

  • I find much to relate to here. I’m 51 and self diagnosed 6 months ago, and on a one year wait for formal evaluation.

    I started “feeling old” ten years ago, exhausted by expectations at work and needing to distance myself from “alpha” type people.

    Like you, I’m sorting through my repertoire of behaviours and working out what is old masking, what is authentic me, and what is useful. Time to buy new clothes, indeed.

    I do know that the clothes I masked in were effective but heavy and too stifling in the heat, and thinner clothes are needed now.

    Liked by 4 people

    • soniaboue says:

      TY so much for reading and commenting Alan. Good to know this resonates with you. I love the term “alpha” type people…#shudder

      Liked by 2 people

      • I had at least three major periods of sick leave diagnosed as depression, and each time I though I simply demonised the predominantly male middle-aged demographic I work alongside as too serious and stuffy and boring. All the time struggling with friendships, having no male friends (hence work environment not seeming supportive / friendly) and craving to go and work in a florists or something away from pressure to perform. Which of course I couldn’t afford to do whilst supporting my family.

        Like you I’ve now blogged and blogged until I’ve made sense of it, after the penny dropped (realisation of my sensory processing, cognitive issues and that my dad is ASD).

        Liked by 2 people

    • Victoria says:

      Ty,I’m 50 self diagnosed & finally realized women’s clothe styles & materials caused a lot of anxiety for me. Now I’m very happy in plain simple cotton men’s jeans, shirts & jumpers. For the first time in my life I am now excited choosing clothes.

      Liked by 2 people

  • Rosie Barnes says:

    You’re amazing Sonia. Gifts in expression and communication so plentiful and accessible. Thank you. Rx

    >

    Liked by 2 people

  • VisualVox says:

    Reblogged this on Just Under Your Radar and commented:
    Great post! I can really relate. These days, I tend to think of masking in terms of bilingualism – being functional in a second language in a culture that’s not native to me. I don’t think of it as a betrayal of myself, because I’m very, *very* clear about the things I do and do not relate to, in the non-autistic world and ways.

    I’ve probably benefited a lot from being a lesbian, since that trained me to walk the fine line between the straight world and my own sensibilities. It seems I’m at odds with everything considered “the norm”!

    Ha! Well, it’s everyone else’s loss, that they don’t inhabit my world. It’s amazing and wonderful here. And it’s exhausting, dealing with everyone on outside. That exhaustion tends to make passing/masking/blending seem negative, but it’s just my fatigue talking.

    … hard to differentiate between goodness and wretchedness, when I’m exhausted, which is a lot.

    But I do have my refuge, my solitude, my isolation, my hermitage of a life. So, that saves me. Each and every day, it saves me. That, and compassion I can never seem to fully escape. Even for people who are highly adept at making my life a living hell.

    Funny how that works…

    Again, great post!

    Liked by 1 person

  • Since reading this (excellent) post yesterday it took me a while to think this through! My masking requirements have greatly reduced in the last year since leaving the day job. Now that I am able to spend more time alone and to choose who I spend time with with (ie the ones who appreciate the mask-free version of me) I am starting to enjoy more energy and so I feel less old.

    A lifetime of trying (and failing) to meet other people’s expectations was confusing and exhausting; and made me feel alienated and stupid.

    Recently I’ve been giving myself permission to say no, to spend hours alone when I need to, to stop and think what I need, to ramble and flap at people when I am excited and to close my eyes and switch off when I am not.

    Which is not to say that peeling off that mask is a pain-free process, but DAMN, if it isn’t more comfortable spending time without one! xx

    Liked by 2 people

  • Reblogged this on bunnyhopscotch and commented:
    No better words than these. Thank you once again, Sonia! xo

    Like

  • allisonhind says:

    I wasn’t diagnosed until I was 35, almost two years ago, and since then it’s been a process of untangling which behaviors are masking and which are authentic and trying to teach myself that masking is a choice and does not have to be an automatic response.

    But it’s been hard because so many people have known me in a certain way for such a long time, and many of them have no understanding of autism beyond having once watched Rain Man. As a result, when I choose not to mask, even in small ways (like giving myself permission to not make much eye contact during a conversation), I’m accused of acting, when in reality, for the first time, I’m not.

    And then of course there are the times when I can’t mask because something happens that I just miss, and in these cases I’m sometimes accused of lying or manipulating. I’m told I’m “way too smart” not to have realized a certain comment would be offensive or to have misread a person’s tone or intentions. So I must have “meant something” by it or have “ulterior motives” for “pretending to miss” something.

    Everyone lies sometimes but I’m someone who’s generally known for being honest even where it doesn’t benefit me. Character is something that I value highly. So it’s just been uncomfortable and painful to have all of this create situations where I’m wrongly accused of dishonesty.

    Liked by 2 people

    • soniaboue says:

      I read you Alison! TYSM for reading and making a full comment. It helps us all to compare notes I think. I agree that being read the wrong way by NT is really uncomfortable and feel terribly unjust.

      Like

  • Wow, this was very informative for me. Thanks

    Liked by 2 people

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